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2.Fear : - of cancer (almost all my family has died from it :mom, dad , uncle, sis ...) - of disclosure ( consequences for my kids , wife my job ) - of nasty side effects ( lypo , neuropathy , ....) - fearing to die in a pity way - some other medical issues that have to be solved (varicose veins opperation...........) -because I was late starter and doc have saved my life CD4=58 ( with no visible signs beside a termendous tiredness and throath Candida)

3."living a lie" life style.........only my wife know

4.Shame because I`m afraid of allowing myself to ask for help.( in some matters : specialist - proctologyst , .....)

5.Being a black sheep : loosing my all day permanent job as a engineer ( due to a tiredness and Sustiva.........)while everybody else is working.That has as a consequence :Quote :Feelings of worthlessness; like I failed somehow. Feeling "damaged." Fatigue and lack of motivation. Severe mood/attitude swings

6.Feeling that I `ve betray my kids and wife: only truly friends beside my parents that I`ve ever had >consequence : deep Depression without any social support........................

7.Feeling like I have committed a self suicide (like dying inside me)

8.Bad dreams and inner thoughts that won`t go away.

9.Anger because I was never like this before

10.Great Mental & physical tiredness because of stated above.Feeling that I`ve did not deserved this desease............

Enough.......................?

But a question is :

How to get rid of all of this ?Sorry if this was too depressing and too direct but the title was apropriate and I have no other place to speak.And there are many fine members here......... ( with great dose of courage , dignity and human feelings toward other members)

What i meant is a fact that I`m fighting not to use those things to eradicate fear.This desease is not an ordinary one.Because in most deseases you are fighting one enemy ( high pressure , heart , ...) , or two/three ( diabetes in late stages).But here feel like walking in a Bronx in a middle of a darkest nightwaiting to be robbed again & again..................or fight against whole highschool class of yours.................no single day of rest , without fear ( not all of them , but they DO have a pattern of showing) , meds , side effects...........add more............... AlAnd a purpose was to point to all of them and to find a way to fight back.

Treatment adherence. It's an enormous effort for Matty the Damned. Not the night-time dose, but remembering to take the morning dose.

Bugger. Which is what I've gotta do know. Ah, shit! Or did I already take the fucking thing?

MtD(Who can never remember)

That I totaly agree with and then the total and utter exhaustion in th early afternoons. I have had a bout of depression a few months back after three years of living with Hiv But my doctor has put me on a course of Happy tablets and it's improving.

i have read this thread with great interest and at the same time, with such sadness. it troubles me that after 26 years of hiv/aids in the world, and especially here in the usa, STIGMA & disclosure issues still rule so many lives.

It is not only the USA but the same still happens in South Africa and I am sure that it happens all across the world if we take the time to find out about it

we ( LTS's) have had an adequate amount of time to process much of the anger, frustration, despair, fear, anxiety, etc,etc that comes after the shock of our initial diagnosis. i understand it is a long term process getting through the multitude of feelings associated with having an illness that we were supposed to die from. then having to adjust from "i'm going to die" mode to " now that i am living with hiv, how am i going to deal with side effects and other complexities associated with "living with hiv"( ie. insurances, re-entering the work force, dating, & long term relationships). wow, it was just as tiring listing them as it was thinking about what it took to get through them!

I've learnt to adopt the attitude of "SO WHAT"

now i resent hidding behind the stigma, and choose to reject stigma as part of my life. are their other LTS's that feel the same way? if you don't, why not?

screw the military, but thanks for reminding me that there is a time and a place to disclose. to me, there are plenty of times we need to disclose, otherwise how do we teach the less educated to fear the virus, not us?

be honest with me LTS's? am i living a pipe dream here or am i right? that the time has come for us LTS's to stand up against stigma, and give the newly infected folks the courage to be open about their status, so parents, siblings, and friends can share in supporting them through the difficulties of living with their illness. that we don't die alone leaving our loved ones at the casket with the question, "why didn't he/she tell me they had aids?"

enough is enough. no person should have to fear disclosing to those whom they care most about. it is time to break down those barriers so living with hiv can be about support & survival, not silence & stigma!

FEAR THE VIRUS, NOT US!

AM I RIGHT?

kellyspoppi

In South africa Our Support froup motto is "Nothing For us Without Us" Can We do that if we are not willing to talk about it?

My biggest challenge has been to keep smiling. When the people close to me have been told and they fall apart i feel i have to be strong for everyone.Before the aids i was always the person that made everyone smile, that friends would come to looking for comfort and a shoulder to cry on. I was always the person to deal with other people's problems. So when my new found friend (or should that be fiend, aids) came along and almost took me away, i have found it hard to cry in front of people. I still remember laying in the hospital bed hooked up to drips and oxygen when i was told i had aids and thinking, all i want to do is cry, but behind the curtain were family and my boyfriend and i was not able to, so the doctor went away and the curtain was drawn back and i smiled and said " they think it's a viral chest infection". That night i told my boyfriend, he fell apart and i took him in my arms and held him until he stopped crying, all the time i couldn't cry but kept saying its fine, I'm going to be okay.

When my bloods have come back lower than i had hoped and prayed for i still manage to smile and say "Its fine, they will be better next time". I still have not cried about the whole situation, but put on a brave face and face the world.

The hardest part is not telling everyone. I am new to all this. I have started being angry at the world i think and want both the acceptance and the conflict that disclosing would bring. didnt realize how angry I was till it was pointed out=//. i committed with my therapist not to go all radical and seek long term problems by being over open

« Last Edit: May 05, 2007, 09:06:21 PM by planonstaying »

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If someone tells you potential consequences of a behavior it doesn't mean they jude you or mit they may just give a shit about you

Actually, when I found out I told someone I was in treatment with at the time. Well, my mom called on our patient's phone in the lobby and the person I told answered. She told my mother, who, of course, immediately panicked. My first husband died two days later. So my mom came up to the treatment center and brought my daughter up with her, who was five at the time. I had to tell my daughter about her father, but I didn't tell her about the HIV. When I got out of treatment, I got a degree in medical assisting and got my daughter tested by one of the pediatricians where I worked. The doctor just told her she needed to check on how her (my daughter's) body was doing. Thank God she tested negative. I don't know what I would have done, since this was back in '89 and they didn't have the treatment advances they do today. I'm truly grateful that she was negative. My heart pounded all the way to my daughter's doctor's office to get the results!

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I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

uhm...bettytacy, strayboy and milker can I dare be so bold as ask that you don't make this a joke thread? Personally - I don't appreciate it.

Have fun all you want in the off topic forum where I guarantee you will not hear a word from me, but as someone who comes here to deal with Living with HIV your irrelevant comments really hurt me and disturb me.

uhm...bettytacy, strayboy and milker can I dare be so bold as ask that you don't make this a joke thread? Personally - I don't appreciate it.

Have fun all you want in the off topic forum where I guarantee you will not hear a word from me, but as someone who comes here to deal with Living with HIV your irrelevant comments really hurt me and disturb me.

With all due respect, iggy, my question and my biggest challenge have all been on the level.

I never took this thread as a joke.

And if you feel that my responses in this thread have been such, all I can tell you is that it's a pity you feel that way.

I'm sure that if you reread my postings sans ego and attitude, you'll find that the whole transpiring was genuine. So, if my postings in this thread, do indeed 'hurt' and 'disturb' you (as you say), then it's entirely an issue of your own creation, and I fear I cannot help you.

OK, please pause for a minute here folks, before this powerful thread gets sidetracked through what I think maybe a misunderstanding.

Iggy, I don't read the comments you are getting as a deterioration of the thread into move into jokes as being that. What I get is a very real and common problem of side effects being referred to by Betty, Stray and Milker with some dark humor.

However, even as I say that, at the same time I would ask them and others to not get into personality interpretations and exchanges, but rather stay on course with the theme of this thread which has evoked affecting responses from so many members.

biggest challenge is finding a lover, partner, or long term relationship. often when i meet someone new and maybe have dated a few times, the feeling that it might turn into something long term is immediately and completely overwhelemed by the odds that the potential partner is probaly negative. (has happened way too many times). almost always now i work hiv status into the conversation right away if i feel like there is long term potential. better to have the pain up front before investing a lot of energy and emotion into the relationship. its a horrible barrier to being intimate and dating. knowing that being hiv+ extreemely limits options for potential partners is a source of constant depression. i travel a lot for work and often in remote locations. that plus being poz makes me wonder if i'll ever have a partner again.

I couldn't had said it better. I'm going to have to stick a dildo in that slowly closing relationship window.

Another challenge for me is facing that there is a big chance I will have to actually watch my parents or siblings die. Or that I just might be in a position to grow old alone and rot in my bed before anyone notices.

i have re-read this thread after being away for a few days, and a couple of common issues remind me of the days of turmoil and darkness.

depression. boy can i identify with that. i really hadn't had a chance to deal with my pwn hiv until my fiance died. i just remember than when she was alive things seemed normal. as long as we had each other, we could deal with this disease together.

after she passed and the family and friends had left after the wake and funeral, i remember laying on the end of the bed saying over and over"who is going to want me now that i have hiv?". then the sobbing started and seemed like it would never end.

i couldn't get under the covers in bed without her there to warm my soul anymore, so i spent every night lying on the edge of the bed staring at the television until it would my eyes were so tired they couldn't stay open. one can only take that so long.

so then i tried hitting the bars trying to find someone to fill the void. every single weekend was the same routine. as soon as my son was picked up by my ex, i was right out the door behind them heading to the first bar. most nights i was blind by midnight but somehow maintained standing until they closed as the birds began to churp. how i made it home i'll never know.

music made me cry during this depression and i couldn't seem to get out of this hole i was digging myself into, deeper & deeper as the loneliness and despair became more overwhelming.

as i said before, a near miss accident startled me enough where i began to seek help. that was 1991, and i am still here to tell you that finding yourself a good therapist, one who can teach you cleansing meditations, visualizations, hypnothereapy, etc etc can make all the difference in the world.

for those with relationship issues, this too was a tremendous sourse of my depression. i was in my late 30's when my fiance passed. i had a great job, decent apartment, and i still felt i looked pretty damn good for my age. but hiv made me feel like i lost that edge, like i was dirty, like i had this flaw on my person that everyone could see.

anytime i found myself in a one night stand, i had this mind blowing fight between the devil on one shoulder saying "go for it!" while the angel was on the other shoulder saying "you must disclose!" who the hell could get a rubber on with all that infighting!

most times i would tell her i just wanted to pleasure her so i wouldn't have to disclose, but sure enough, a few nights later they would be back and place me in that situation once again. some would burn skid marks running out the door, and some would stay.

then you had to deal with "how were their family and friends going to feel with this guy playing russian roulette with their loved one!" or some that were so interested in getting married, they tried to get infected by you just to make sure you wouldn't break up with them. how bizzare!

therapy helped me work through all that. after going to the clinic with one of my negative girlfriends, sitting in the waiting room waiting for her to get her test results, i had a panic attack. that was the last time i dated a negative woman. i just couldn't live with the thought of being responcible for passing this onto another.

once i came to that realization, i met my current wife at a hiv support group. call it faite. whatever, it was how it worked itself out for me.

i just wanted to let you know, i have been there, and this is how i survived my depression.

I'd say the biggest challenge I face is that there is (currently) no closure to it. Other challenges (getting through school, an unpleasant job, a crappy relationship, many other illnesses/conditions) have a point where you're done or you just walk away. Then you can begin to get on with your life. Then you can exhale and say "that sucked, but I'm past it now."

With HIV, we don't yet have the luxury of closure. Every time I take these damned pills (and I've never missed a dose, despite major med burnout here), I'm reminded that I have a stigmatized illness that, frankly, most of the world doesn't have. I'm reminded of the fact that I was infected by someone who betrayed me. Every time I go in for bloodwork, part of me remembers the sheer terror I felt in the doctor's office when I first got that poz diagnosis. And as undetectable as I may be, as robust as my immune system is (knock on wood), and no matter how much personal and professional fulfilment I may have, I'm still just as HIV+ as I was on the day I was diagnosed. And that, barring some amazing cure, therapeutic vaccine, or non-daily treatment option, I know that in six months, one year, five years, ten years, I'll still be taking pills, every single day, because I'll still be just as poz as I am now, as I was nearly eight years ago when I was diagnosed.

as you could tell from my previous post, i too was there once. but the fact is, we have hiv and we will have it for all long time to come, and all the baggage that comes with treating it.

i used to think it was like walking down the street with this dark cloud hovering over my head wondering when the hammer was going to drop down and hit me. but that was before they found meds to keep us alive.

another way i viewed it was that it was like i was a runner being chased by hiv. as long as i was capable of staying out in front of it, then aids would never rear it's ugly head into my system. meds have given us the potential for a longer life before that happens. yes, it can be exhausting, just thinking about the complexities of that prognosis, but choosing to "live" that complex life is really up to you.

back in 1990, i went to a large group psychic reading (about 20 people in the circle) and during the course of several readings, one of the psychics called out my name. he said i have a message for you. i see this extremely dark cloud hanging over your head, but i want you to know that there is brilliant rays of sunshine about to rise above all that darkness, and that soon your feelings of despair will be lifted.

i had no clue what he meant by that at the time, but certainly now, 17 years later, i do. knowing you have the availability to live a somewhat normal life should bring "hope" into the picture. without hope, we would be nowhere.

now it becomes a matter of "what are we going to do with the rest of our lives?" are we going to let hiv rule our life, or find a way to take back control. that is totally up to the both of you.

i have done everything i possibly can to take back control of my life. to become educated about my illness and about my treatment. i have become an advocate for myself and others with this illness who can't, or won't speak out for themselves. i have connected myself to the hiv community by getting involved with those agencies who serve us so that they have a voice of the client to deal with. and i have tried to live my life as though hiv was just a nuisance, like some dog who comes up barking at you when you are out for a walk. if you stare him down, he'll go away.

reach out my friends, and get connected. regain control by making your body, mind, and spirit whole again. then pick up a glove and get back in the ball game!life is all about choices, giving in, or getting on with it.

I appreciate your words, Kellyspoppi, but I don't want to give off the wrong impression. I'm not sitting around sulking and sobbing. I'm generally an upbeat person, and since my diagnosis, I've pursued my education, built my career, traveled, become a vegetarian, quit smoking, etc. But since the thread was about personal challenges, I admitted mine. I don't like being "chased by HIV." And I'm far from being newly diagnosed. I don't think I ever will be "okay" with it. That doesn't mean I'm being held back or missing out on the fullness of life. For the most part, I'm not letting HIV control my life. In fact, unless I'm taking meds or posting here, I usually don't think about it. I'm certainly not in denial and have accepted the reality of this. But that reality is that no matter how successful, active, happy, and healthy we are, we still have to take those same pills, deal with the same side effects, etc., which implies that we do have to give up some control.

And since the community here was asked, I confessed that the open-endedness (the very need to take toxic pills day in and day out to stave off illness and/or death) of this does bug me. The (as yet) neverending quality of the nuisance of this does annoy me and will probably continue to annoy me. If there ever (miraculously) is a cure or a therapeutic vaccine, then the memory of the experience will likely annoy me. I guess that's just one of my nutty quirks.

Being newly diagnosed the biggest challenge is believing it...oh, I'm reminded everyday when I take my meds and I basically think about it every minute but it still does not feel real. I imagine that must sound a bit off but I've felt like I've been watching a movie about myself with a similar type of disconnection and ambivalence I would a summer blockbuster.

That, coupled with telling or not telling friends and family, guilt, shame, worry about my partner, future..all the regular feelings I expect that come along with being HIV positive.

Now that I'm sitting here writing this, I actually think that one of the biggest issues is the shame. I realize this is a common theme, but if I was diagnosed with testicular cancer I would not be hesitant to tell any of my family or friends. It is, once again, the stigma surrounding HIV that makes it so much more difficult; at least for me.

5.Being a black sheep : loosing my all day permanent job as a engineer ( due to a tiredness and Sustiva.........)while everybody else is working.That has as a consequence :Quote :Feelings of worthlessness; like I failed somehow. Feeling "damaged." Fatigue and lack of motivation. Severe mood/attitude swings

Part of your combo is SUSTIVA? I think you should find out if you can get off this drug.

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“From each, according to his ability; to each, according to his need” 1875 K Marx

Certainly stigma is there and it is a challenge. I find stigma is more of a side effect of terrible care in my area (Atlanta). Depression and severe fatigue, too, but I think I could reduce the severity of each if I didn't have the stress of trying to get my medication and adjunct care, as well as trying to keep my food stamps, etc.

Birmingham, Alabama is light years ahead of Atlanta as far as COMPREHENSIVE HIV care goes, in my experience.

Certainly stigma is there and it is a challenge. I find stigma is more of a side effect of terrible care in my area (Atlanta). Depression and severe fatigue, too, but I think I could reduce the severity of each if I didn't have the stress of trying to get my medication and adjunct care, as well as trying to keep my food stamps, etc.

Birmingham, Alabama is light years ahead of Atlanta as far as COMPREHENSIVE HIV care goes, in my experience.

I have spent my entire twenty years with HIV in Atlanta and hae managed to receive pretty adequate care, even during the slurry of misinformation that comprised the late 90s and early 00's. Might I ask where you are getting care?

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"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

Shame it didn't get more responses. I think it's really good Idea for everyone just coming on and letting all their challenges/fears/pain out in a rant I hope everyone is okay. This is a specially family, who support people they have never met around the world giving them strength and hope x

Personally, I don't think there is anything wrong with reopening an older thread.

It's kind of interesting to see where we've been, and where we are now.

In April of 2007, I wrote in this thread, that my biggest challenge was

"Making sure I get myself up for work every night ! That's my main goal/challenge, keeping myself employed."

And now in November 2013, I am ready to retire from the same job, that was a challenge for me over 6 years ago. I think that's an achievement. I set my goals, conquered my challenges and it's paying off.

I agree Ray. Actually for many reasons, two of which are the fact that it was a good question to begin with and the other being many of us were not on this site when it was posed. I will have to put a bit of thought before I post but would bet the answers will be much different and yet much the same. (yes, it can happen .)So many variables both personally and progress in terms of facing new challenges let alone the differences in age and length of time having this bugger in our bods.I'm hoping to hear more from everyone too.

Thank you also curious1here for your description of this place. It is exactly how I feel.

It's time for this thread to continue as it is an ongoing process for all of us.

My biggest challenge when I was first diagnosed was to figure out how to deal with the anger at myself that was affecting my job and relationships at the time.

Now, the biggest challenge I face is navigating health insurance plans to make sure I can switch jobs. Quitting a job and moving onto a new one isn't as easy as it was prior to my diagnosis. It requires some planning, and sometimes even COBRA coverage.

This gets a bit complex so bare with me as my emotions are on steroids.

Mom has enough electrical cords plugged into her brain to grasp the fact that she knows her life is fading. She is depressed, angry, confused and fearful. She doesn't know where to turn at times.

Unfortunately she knows many connections are lost forever.

What to do, what to do. I guess it's just part of life and being human.

This disease has taken a toll on my life. Cognitive awareness seems to slip away in silence. The similarities between my mother and I scare the shit out of me as I know the age difference between us should have delayed our common bond.

So my answer is Ageing with HIV after 31 years.

This is simply my experience and I know those of you that have not lived with this virus as long as I will fare much better.

I strongly suggest to the moderators that this thread become a sticky because it chronicles the struggle each and every one of us faces along the journey.

What I have posted today will most likely change in the years to come. I try my best to be optimistic even in the face of my personal challenges. Ya, I bitch a lot. Comes with the territory.

Being new to this -- now about 3 months in -- my biggest challenge is shaking the somewhat irrational fear that I'm going to lose my mind. That between the virus and the medication, I'm going to start fading mentally, when I've always been, if nothing else, pretty sharp. Fear that I'm not going to be able to take care of myself, that I'm going to lose the capacity to do so.

Fear of wasting away, even though I know its different for the newly infected now than it once was.

That, and the fear that something will happen to my employment and I won't be able to afford having this disease. That the employer will figure out that I've become an expensive employee and conveniently eliminate my position.

Fear that every little thing (a runny nose, a scrape, a zit) is going to explode into something deadly or hideous or both.

Also, the fear that I am all alone. I know I'm not the only person with HIV, but I don't know anyone who has it anymore (the one person I was very close to who had it is now deceased though not from the virus), and I just have a couple friends as it is, and as supportive as they are I'm not sure they quite understand.

I don't really worry about the social stigma in a certain sense, but I guess I *do* in that I worry people will find out and recoil from me.

So, in short, my biggest challenge is the fears that I assume are common for us all.

And mitch777, I hear you on "bitching a lot". You've got 31 years of this, a lot of that time a lot less hopeful than now, so as far as I'm concerned you can bitch bitch bitch away. In fact, please do. Optimism is good for you, but so is venting and expressing yourself. My best wishes for what it's worth to you and your mother as time marches on.

It's interesting to read about the challenges people were having 4 years before I was diagnosed. I wish I had seen this thread when I was diagnosed it may have taken away some of the scardyness that I had.

I think finding straight men who are "willing" (couldn't think of another word) to have a relationship with a woman who has AIDS a challenge.

That and the MOUNTAIN of paperwork I have to do every 6 months.

I agree with Cicero that most of us have the same challenges whether it was when we were newly diagnosed and the challenges have gone away, or challenges that stay with us.

Oh yea, and my doctor still will not let me travel outside of the states yet.

Michelle

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How to handle stress like a dog:If you can't eat it or play with it.....then pee on it and walk away

And mitch777, I hear you on "bitching a lot". You've got 31 years of this, a lot of that time a lot less hopeful than now, so as far as I'm concerned you can bitch bitch bitch away. In fact, please do. Optimism is good for you, but so is venting and expressing yourself. My best wishes for what it's worth to you and your mother as time marches on.

Cicero,

Thanks for you kind words. They have plenty of worth.

I understand your fear of fading mentally as I seem to be living it. I tend to believe that being newly diagnosed with todays meds and meds yet to come that you will likely not have to experience this problem. Even among us LTS, many/most don't have cognitive loss. Of coarse, I'm not sure what lies ahead for any of us but hope and faith are two things we must grab with a tight grip. It's not always easy.

Waking up each morning brings uncertainty for me but I try like hell to enjoy the day.

Oh yea, and my doctor still will not let me travel outside of the states yet.

Why? Do you live with him? Sorry, I know that's flippant, but I've seen you up close and you are a perfectly capable world traveler! I can understand that he might be concerned if you wanted to go somewhere that was known to harbor issues that might compromise someone with a compromised immune system, but I don't see why you can't bloody well go where you please. You're not going to turn to dust should you choose to take a trip to Canada.

the biggest personal challenge I now face is finding the courage to be comfortable with having this so-called "status" that has one of the worst social stigmas associated with it, and being able to dismiss the assumptions that people may make about my lifestyle and all that goes along with it.

I absolutely love this thread and am surprised I hadn't come across it before it was resurrected. It's real and without the usual varnish. It has those details one can only get from others who have lived with this disease other sites can only provide in the most clinical of descriptions. For myself, I want to know what possibly lay ahead other than "I have lived for x number of years with this and so can you." What exactly does that mean anyway? Am I doomed to periodic sicknesses? And what does periodic mean? Weekly? Monthly? Yearly? These are the real stories I come here for and I sure hope there are many more of them.